The SPSRF Medical Advisory Board

Medical Advisory Board Chair

Dr. Jim Weiss recently retired from practicing nephrology in Pittsburgh, Pennsylvania. One of his sons was diagnosed with Stiff Person Syndrome as a young teenager. Both of his children have another rare disorder, Gaucher disease. Jim is a cofounder of a western Pennsylvania organization focused on care for underserved communities.

Medical Advisory Board Member

Dr. Marinos Dalakas is a Professor of Neurology and Director of the Neuromuscular Division at Thomas Jefferson University School of Medicine in Philadelphia. He also serves as a Professor of Neurology and Chief of the Neuroimmunology Laboratory in the Department of Pathophysiology at the University of Athens Medical School in Athens, where he has been an Emeritus Professor since 2016. 

Dr. Dalakas is among the few SPS experts treating patients in the United States and Europe. He has studied and prolifically published research on SPS since the 1980s when he was chief of the neuromuscular diseases section at the National Institute of Neurological Disorders and Stroke (NINDS) in Bethesda, Maryland. 

Dr. Dalakas’s research has been fundamental in describing the natural history of SPS and its clinical subtypes, clinical criteria, diagnosis, electrophysiology, and immunopathogenesis. 

As Chief of the Neuromuscular Diseases Section at the NIH, he conducted the only two controlled studies ever performed in this disease on which the current therapies are based. Notably, Dr. Dalakas was the driving force behind developing the first immunotherapy for SPS, a groundbreaking achievement in 2001. His continued research focuses on finding new antibodies that could lead to more effective treatments while actively pursuing the application of novel immunotherapies for SPS patients with early and refractory disease.

Dr. Dalakas joined The SPSRF Medical Advisory Board in 2022.

Medical Advisory Board Member

Dr. Duarte Machado is a board-certified neurologist with subspecialty training in Movement Disorders. He is currently Director of Program Excellence and Recognition at the Hartford Healthcare Ayer Neuroscience Institute’s Chase Family Movement Disorders Center in Cheshire, CT. Dr. Machado has conducted numerous clinical research projects. He has participated in and helped to organize the Northeast Stiff Person Syndrome Awareness Annual Conference since 2016.

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Dr. Machado is a 2001 graduate of Trinity College with a B.A. in Neuroscience. He is a 2005 graduate of the University of Connecticut’s School of Medicine. He completed neurology residency and fellowship training at the Yale School of Medicine, where he was also chosen to be Chief Resident. Dr. Machado was subsequently recruited to join the faculty at Yale, and also completed the Medical Education Fellowship Program at Yale.

Dr. Machado joined the SPSRF Medical Advisory Board in 2023.

Medical Advisory Board Member

Originally from Ireland Dr McKeon, M.B., B.Ch., M.D. obtained his medical degree from University College Dublin (2000), undertook internal medicine and neurology training in Ireland, and completed fellowships in movement disorders and then autoimmune neurology at Mayo Clinic, Rochester Minnesota, USA. He joined the Mayo Clinic faculty in 2009, as a joint appointee in the Department of Neurology and the Department of Laboratory Medicine and Pathology. He is co-director of the Neuroimmunology Laboratory at Mayo Clinic. He led the development of the glycine receptor antibody assay at Mayo Clinic, and over his time as lab director has developed comprehensive antibody testing evaluations for stiff-person syndrome and other autoimmune neurological disorders.

He is a Professor of Neurology, and also Laboratory Medicine and Pathology in the Mayo Clinic College of Medicine and Science. He is certified in clinical laboratory immunology by the American Board of Medical Laboratory Immunology. Dr. McKeon’s research interests are focused on characterization of new biomarkers of seronegative autoimmune CNS disorders, and is the recipient of an R01 grant from NIH to conduct this work. He has published extensively on the Mayo Clinic experience of the diagnostic features and treatment of stiff-person syndrome and other autoimmune CNS disorders.  

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Dr. McKeon joined The SPSRF Medical Advisory Board in 2022.

Medical Advisory Board Member

Dr. Scott Newsome is Professor of Neurology at Johns Hopkins and specializes in the care of patients with neuroimmunological and neuroinflammatory disorders of the central nervous system. He has special interest in evaluating and treating patients with stiff person syndrome spectrum disorders (SPSD) and multiple sclerosis (MS). Dr. Newsome works within the division of Neuroimmunology and Neurological Infections at Johns Hopkins and joined the faculty after completing a neuroimmunology fellowship. He is director of the Johns Hopkins Stiff Person Syndrome Center and the Johns Hopkins Neurosciences Consultation and Infusion Center. Dr. Newsome is also Director of the Johns Hopkins Neuroimmunology and Neurological Infectious Disease Fellowship Program and Co-Director of the Multiple Sclerosis Experimental Therapeutics Program.

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Dr. Newsome received his medical degree from the New York College of Osteopathic Medicine and graduated with honors. During Dr. Newsome’s neurology residency, he was awarded the Golden Apple Outstanding Resident Teaching Award and later was chosen to be chief resident.  He subsequently completed a fellowship in neuroimmunology at The Johns Hopkins Hospital with the support of the prestigious Sylvia Lawry Physician Fellowship from the National MS Society (NMSS). Dr. Newsome’s fellowship program helped him gain the expertise to treat a broad spectrum of neuroimmunological disorders. It exposed him to all aspects of clinical trials so he could become a clinical trialist. With his fellowship training, he has been involved in designing and executing different types of trials, from early-stage phase I clinical trials through large phase 3 clinical trials.  

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After fellowship, he founded the first Stiff Person Syndrome Center in the world which encompasses a multidisciplinary and multifaceted approach to treating patients. This center continues to build on comprehensive clinical and research programs to help identify ways to improve the lives of people with SPSD. Hence, his research focuses on identifying the full spectrum of clinical presentations, risk factors of disease onset and severity, response to treatment, and long-term outcomes in SPSD, along with helping develop better treatments for SPSD. Notably, Dr. Newsome is leading an initiative on developing international consensus diagnostic criteria for SPSD that will ultimately help decrease the time from symptom onset to diagnosis for people living with SPSD and help prevent and/or minimize misdiagnoses which in turn will help avert the use of unnecessary treatments. Other research endeavors of Dr. Newsome include validating the use of new quantitative clinical outcome measures and imaging techniques in neuroimmunological disorders.

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Dr. Newsome is also passionate about teaching and training the next generation of neuroimmunologists. As faculty and Director of the Johns Hopkins Neuroimmunology and Neurological Infectious Disease fellowship, he has mentored dozens of trainees and been involved in national efforts to develop fellowship curriculum to help ensure trainees receive high-quality training. In addition, he has received several awards for his commitment to teaching, including the NMSS Inspiration Award and the American Academy of Neurology A.B. Baker Teacher Recognition Award.

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Dr. Newsome is also the Founder and Chair of the International Stiff Person Syndrome Consortium, an advisor to The Stiff Person Syndrome Research Foundation, Past-President of the Consortium of Multiple Sclerosis Centers, an advisor for the National Multiple Sclerosis Society, a steering committee member of the International MS Differential Diagnosis Consortium, a member of the Miller-Coulson Academy of Clinical Excellence (highest clinical honor/designee at Johns Hopkins), and is involved in many other committees and initiatives relevant to helping people with autoimmune neurological disorders.

Medical Advisory Board Member

Dr. Amanda Piquet is an Associate Professor, the Director of the Autoimmune Neurology Program, and the Associate Director of the Neuroinfectious Disease and Autoimmune Neurology Fellowship at the University of Colorado Anschutz Medical Center (CU-AMC).

She graduated from Pennsylvania State University School of Medicine, completed her neurology residency at Harvard’s Neurology Program at Massachusetts General Hospital and Brigham and Women’s Hospital, and completed a fellowship in Autoimmune Neurology & Neuroimmunology at the University of Utah. Her main clinical and research interests focus on central nervous system autoimmunity and other neuroinflammatory disorders, including Stiff Person Syndrome. Dr. Piquet sees patients in the outpatient autoimmune/neuroimmunology clinics at the University of Colorado Hospital and in the inpatient neurology and consult services as a neurohospitalist.

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As a foundational component of the Autoimmune Neurology Research Program at CU-AMC, she has created the Autoimmune, Paraneoplastic, and Inflammatory Neurological Disease Patient Registry, capturing clinical and epidemiological data, patient-reported outcomes, and biorepository specimens (blood and cerebrospinal fluid) for biomarker exploration. The goals of this project include characterizing patterns of neuroinflammation and central nervous system injury with the goal of further understanding the pathophysiology of these neuroinflammatory disorders and facilitating the development of future treatment trials by identifying biomarkers that correlate to clinical outcomes reflecting treatment response.

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Dr. Piquet joined Ths SPSRF Medical Advisory Board in 2022.

Medical Advisory Board Member

Isharat (Ish) Yusuf, Executive Director of Discovery Immunology at Mirador Therapeutics, is an immunologist with over 14 years of biotech/pharma experience. Before joining Mirador Therapeutics, she was at Architect Therapeutics and Gossamer Bio, where she held positions with increasing scope and responsibility, including that of the Senior Director of Immunology. Before joining Gossamer Bio, she held research scientist positions at the Novartis Institute for Biomedical Research (NIBR, La Jolla) and MedImmune/AstraZeneca. Ish completed her post-doctoral training in the laboratory of Dr. Shane Crotty at the La Jolla Institute for Immunology. She received her Ph.D. from the University of California, Irvine, and her B.Sc. from California Polytechnic State University, San Luis Obispo.

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As an immunologist, Ish is interested in developing therapeutics for diseases of the immune system with a focus on autoimmune disorders. At MedImmune, she worked on Inebilizumab, which was approved in 2020 for treating neuromyelitis optica spectrum disorder (NMOSD), an autoimmune disease affecting the central nervous system. This experience led Ish to have a specific interest in neuroinflammatory and neurodegenerative diseases. At Gossamer Bio, she was the research lead for an IND-enabled therapeutic for Multiple Sclerosis. Given her interest in this space, Ish is looking forward to contributing to the research and scientific strategy of the Stiff Person Syndrome Research Foundation.

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Dr. Yusuf joined Ths SPSRF Medical Advisory Board in 2022.